global mental health POLICY AND SYSTEMS REVIEW
Reducing the stigma of mental illness H. Stuart* Centre for Health Services and Policy Research, Queen’s University, Kingston, Ontario, Canada Global Mental Health (2016), 3, e17, page 1 of 14. doi:10.1017/gmh.2016.11
This paper presents a narrative review of anti-stigma programming using examples from different countries to understand and describe current best practices in the field. Results highlight the importance of targeting the behavioural outcomes of the stigmatization process (discrimination and social inequity), which is consistent with rights-based or social justice models that emphasize social and economic equity for people with disabilities (such as equitable access to services, education, work, etc.). They also call into question large public education approaches in favour of more targeted contact-based interventions. Finally, to add to the research base on best practices, anti-stigma programs are encouraged to create alliances with university researchers in order to critically evaluate their activities and build better, evidence informed practices. Received 26 May 2015; Revised 8 March 2016; Accepted 27 March 2016 Key words: Mental illness, stigma, stigma reduction.
Introduction The public health importance of mental disorders has been highlighted by the Global Burden of Disease study, which catapulted mental health promotion and prevention onto the global public health stage. In 1990, five of the top ten leading causes of disability worldwide were from mental illnesses, accounting for almost a quarter of the total years lived with a disability (Murray & Lopez, 1996). More recent estimates indicate that the disability associated with mental and substance abuse disorders has grown from 5.4% of all disability-adjusted years of life worldwide in 1990, to 7.4% in 2010 (Whiteford et al. 2014). Estimates from community-based epidemiologic surveys place the lifetime prevalence of mental disorders to be as high as 50% and the 1-year prevalence to be as high as 30%, depending on the country (Kohn et al. 2004).
* Address for correspondence: Professor H. Stuart, Bell Canada Mental Health and Anti-stigma Research Chair, Centre for Health Services and Policy Research, Queen’s University, Room 324 Abramsky Hall, Kingston, Ontario K7L 3N6, Canada. (Email: [email protected])
Despite growing recognition of the burden associated with mental illnesses, and the availability of cost-effective treatments, they are not yet afforded the same policy or program priority as comparably disabling physical conditions. The most recent World Health Organization Mental Health Atlas clearly demonstrates the inadequacies of mental health treatment infrastructure worldwide. For example, the average per capita spending on mental healthcare is less than 2 US$ and less than 25 cents in low-income countries. Almost half of the world’s population lives in a country with less than one psychiatrist per 200 000 residents. Despite decades of deinstitutionalization, still 63% of the world’s psychiatric beds remain in large mental hospitals, known for anti-therapeutic environments and human rights violations, taking up 67% of total spending (World Health Organization, 2011). Data from the World Health Organization’s Mental Health Consortium Surveys show that, in developed countries, 35–50% of people with serious mental illnesses living in the community had not received treatment in the year prior to the survey. In developing countries, unmet need was as high as 85% (The WHO Mental Health Survey Consortium, 2004).
© The Author(s) 2016. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
global mental health
Statistics such as these highlight the substantial gap between the public health burden caused by mental illnesses and the resources needed to prevent and treat them, particularly in low- and middle-income countries. In some lower income countries, for example, families cope with the lack of treatment resources by chaining a mentally ill relative to an immovable structure, such as a tree or a bench, where they are open to public scrutiny, teasing, and humiliation. In others, they are caged, beaten, maltreated, or thrown out of their communities where they are mauled or eaten by wild animals (Lee, 2002). As this literature shows, in addition to the symptoms of the illness, people with mental disorders must also endure important structural inequities that impinge on their health, welfare, civic participation, access to resources, and quality of life, and this is particularly true of people with mental illnesses living in middle- or low-income countries where flagrant human rights abuses are common (Arboleda-Florez & Stuart, 2012). Negative societal responses to people with mental illnesses may be the single greatest barrier to the development of mental health programs worldwide. These pernicious effects, and the associated human rights issues, are increasingly recognized as a worthy target for social action. In recent years, a number of programs have been implemented under the rubric of ‘antistigma programming’ to promote greater social equity for people with mental illnesses. This paper provides a narrative review of antistigma programming using examples drawn from different countries to illustrate promising or best practices in the field. The paper does not provide an exhaustive or systematic review of anti-stigma programs, but rather selects programs for the elements that best illustrate the points being made. Large, more recently mounted programs, and those with an evidence base were preferred as they provide current examples of activities in the field. Large national or regional programs are noticeably absent in low- and middleincome countries; however, a number of local implementation projects are discussed to illustrate the potential for transferability of concepts and approaches from high- to low-income settings. Stigma defined Link & Phelan (2001) have noted that considerable variation exists in the scientific literature concerning the definition of stigma. In many instances, it is used vaguely to refer to a mark of shame or disgrace, or to some related concept such as stereotyping or rejection. When it is explicitly defined, Goffman’s seminal conceptualization is often used, where stigma is an attribute that is deeply discrediting – one that taints the bearer
and reduces their social value. By comparison, Thornicroft (2006) focus on three social psychological aspects of the problem: knowledge, attitudes, and behaviour, while Link and Phelan take a broader, sociostructural view. From this broader perspective, stigma exists when a number of components interact. First, people must distinguish and label a particular human difference (in this case mental illness) as socially salient, resulting in culturally derived categories that are used to differentiate people into groups. Second, labelled differences must be linked to a set of undesirable characteristics thus forming a negative cultural stereotype (or oversimplified characterization) that is summarily applied to every member of the group. Third, those who are so labelled and stereotyped are seen as fundamentally different from the dominant group, creating an ‘us-them’ demarcation. Fourth, stigmatized groups are socially devalued and systematically disadvantaged with respect to access to social and economic goods (such as income, education, housing status), creating poorer health and social outcomes. Discrimination may be experienced in the context of individual interactions, or it may be structural, when accumulated institutional practices create inequities. Finally, stigmatization is entirely contingent on access to social and economic power, as only powerful groups can fully disapprove and marginalize others. According to this conceptualization, approaches to stigma reduction must be multi-faceted to address the many mechanisms that can lead to disadvantaged outcomes; and multilevel, to address stigma perpetuated at the individual and social-structural levels. Link and Phelan suggest that interventions targeted at only one mechanism (such as employment equity), will be doomed because their effectiveness will be undermined by the broader social factors that are left untouched. They suggest that interventions must either produce fundamental changes in the negative attitudes and beliefs of members of powerful groups, or change the power relations that underlie their ability to act on these attitudes and beliefs (Link & Phelan, 2001). When considering stigma in a global public health perspective, a definition that highlights the serious social and structural forces that create inequities for people with a mental illness is preferred, because this is the stark reality for those living in middle- and low-income countries, where policy, health system, and financial resources systematically exclude people with a mental illness and their family members. Despite the comprehensive definition offered by Link and Phelan, many anti-stigma programs continue to use the term ‘stigma’ synonymously with attitudes (e.g. Time To Change, http://www.time-to-change. org.uk, see Me Scotland, http://www.seemescotland. org). Advocates such as Everett (2004) or Sayce
global mental health
(2003) have criticized the stigma-as-attitude perspective because it fails to highlight the fact that people with mental illnesses routinely have their civic and human rights violated. They would prefer a rights-based or social justice model that shifts the emphasis away from attitudes to the need for social and economic equity for people with disabilities in all areas of life, including access to health services, education, and work. Cross-cultural differences in stigma Outside of the clear structural inequities in mental health systems and access to care that disproportionately affect low- and middle-income countries (The World Health Organization, 2003), there have been few attempts to directly examine cross-cultural differences in public or personal stigma using common standardized approaches to data collection and measurement. A notable exception is the study by Thornicroft et al. (2009) who have documented the personal stigma experiences of 732 people with schizophrenia from 27 developed and developing countries. Fully three quarters (72%) indicated they felt the need to conceal their diagnosis, 64% anticipated they would be discriminated against in applying for work training or education, and 55% anticipated discrimination in close relationships. The effects of discrimination were evident across a broad range of daily experiences such as with family, friends, and employers, across all of the countries studied. In a subsequent analysis, qualitative data from 15 of the participating countries was undertaken (Rose et al. 2007). Surprisingly few cross-cultural differences were identified, confirming that personal experiences of stigma are pervasive and a global public health problem. In 2015, the ASPEN study group (Anti-stigma Program European Network) examined discrimination reported by 1082 people with depression in 34 countries categorized according to their Human Development Index score (Very High; High; Medium/Low) (Lasalvia et al. 2015). Participants in high-income countries (with higher human development index scores) were statistically more likely to anticipate being discriminated against, but were no more likely to report having experienced discrimination. Potential reasons for the higher anticipated discrimination in high-income countries include the nature of employment, broader socio-economic context, explanatory models of mental disorders, and selfattribution. For example, almost twice as many individuals living in high-income countries anticipated employment discrimination. In lower income countries, there may be a greater emphasis on family and community ties and higher levels of community support for people who have mental disorders. Explanatory models
of mental disorders in lower income countries also place less blame on the individual and the family by attributing causes of mental illnesses to external factors beyond the individual’s control such as God’s will, Karma, or other supernatural entities. The service user movement in lower income countries is under-developed or nonexistent so individuals with mental disorders in these countries may be less aware of the nature of stigma and its consequences. As countries develop, anticipated stigma may increase. In 2015, Stuart et al. (2015) examined the image of psychiatry and psychiatrists among a randomly selected sample of 1057 non-psychiatric clinical teaching faculty across 15 academic teaching centres, the bulk of which were in lower and middle-income countries. A total of 90% of respondents considered that psychiatrists were not good role models for medical students, 84% thought psychiatric patients were unsuitable to be treated outside of specialized facilities, and 73% thought that psychiatric patients were emotionally draining. There were statistically significant differences in stigma scores (calculated as the count of all items endorsed) in only three countries (China, which was lower than average; and Ukraine and Russia, which were higher than average). Country differences explained only 18% of the variation in the mean scale score. These results support the idea that negative attitudes held by professionals are globally pervasive and more similar that dissimilar across countries. More recently, Seeman et al. (2016) conducted a world survey of mental illness stigma using a novel web-based platform that reached more than half a million respondents in 229 countries. This study did not use a standardized stigma measure and probably targeted web-savvy respondents (young, males, with higher education). In the more developed countries (Canada, the USA, and Australia), 7–8% of respondents indicated that people with a mental illness were more violent, compared to 15–16% in developing countries (Algeria, Mexico, Morocco, and China). One can only speculate as to why those in developing countries are more apt to describe someone with a mental illness as violent. As Seeman and colleagues point out, culture, tradition, and access to education and healthcare all shape public perceptions of mental illness. It is difficult to know whether attitudinal or other factors that are associated with the lower treatment gap in high-income countries compared with low, may account for these differences. For example, in developing countries because there is a relative lack of treatment and hospital facilities to prevent or contain potential violence, one might imagine that there is greater exposure to serious mental illness and associated violence in the community. However, in many developing countries, people with more serious
global mental health
disorders are typically managed at home where they may be hidden away to avoid shame and embarrassment, or they may be segregated in large and far away mental hospitals. Those in the community would then represent people with less severe disorders who are less likely to become violent. Despite dayto-day experiences, the public stereotype still may be that the ‘mentally ill’ (defined as those that must be hidden away) are more disturbed and violent. Whatever the explanation, these findings do suggest that the content of public stereotypes may differ depending on country and development level. More research is now needed to uncover the social and cultural conditions that may explain these findings. There is also evidence that the content of public stereotypes and stigmatizing attitudes differs depending on the disorder group considered. For example, in a random sample of Americans responding to the General Social Survey, vignettes of people with drug or alcohol dependence were more likely to be rated as likely to be a danger to others (over 60% agreed); compared with those who were troubled (
Reducing the stigma of mental illness H. Stuart* Centre for Health Services and Policy Research, Queen’s University, Kingston, Ontario, Canada Global Mental Health (2016), 3, e17, page 1 of 14. doi:10.1017/gmh.2016.11
This paper presents a narrative review of anti-stigma programming using examples from different countries to understand and describe current best practices in the field. Results highlight the importance of targeting the behavioural outcomes of the stigmatization process (discrimination and social inequity), which is consistent with rights-based or social justice models that emphasize social and economic equity for people with disabilities (such as equitable access to services, education, work, etc.). They also call into question large public education approaches in favour of more targeted contact-based interventions. Finally, to add to the research base on best practices, anti-stigma programs are encouraged to create alliances with university researchers in order to critically evaluate their activities and build better, evidence informed practices. Received 26 May 2015; Revised 8 March 2016; Accepted 27 March 2016 Key words: Mental illness, stigma, stigma reduction.
Introduction The public health importance of mental disorders has been highlighted by the Global Burden of Disease study, which catapulted mental health promotion and prevention onto the global public health stage. In 1990, five of the top ten leading causes of disability worldwide were from mental illnesses, accounting for almost a quarter of the total years lived with a disability (Murray & Lopez, 1996). More recent estimates indicate that the disability associated with mental and substance abuse disorders has grown from 5.4% of all disability-adjusted years of life worldwide in 1990, to 7.4% in 2010 (Whiteford et al. 2014). Estimates from community-based epidemiologic surveys place the lifetime prevalence of mental disorders to be as high as 50% and the 1-year prevalence to be as high as 30%, depending on the country (Kohn et al. 2004).
* Address for correspondence: Professor H. Stuart, Bell Canada Mental Health and Anti-stigma Research Chair, Centre for Health Services and Policy Research, Queen’s University, Room 324 Abramsky Hall, Kingston, Ontario K7L 3N6, Canada. (Email: [email protected])
Despite growing recognition of the burden associated with mental illnesses, and the availability of cost-effective treatments, they are not yet afforded the same policy or program priority as comparably disabling physical conditions. The most recent World Health Organization Mental Health Atlas clearly demonstrates the inadequacies of mental health treatment infrastructure worldwide. For example, the average per capita spending on mental healthcare is less than 2 US$ and less than 25 cents in low-income countries. Almost half of the world’s population lives in a country with less than one psychiatrist per 200 000 residents. Despite decades of deinstitutionalization, still 63% of the world’s psychiatric beds remain in large mental hospitals, known for anti-therapeutic environments and human rights violations, taking up 67% of total spending (World Health Organization, 2011). Data from the World Health Organization’s Mental Health Consortium Surveys show that, in developed countries, 35–50% of people with serious mental illnesses living in the community had not received treatment in the year prior to the survey. In developing countries, unmet need was as high as 85% (The WHO Mental Health Survey Consortium, 2004).
© The Author(s) 2016. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
global mental health
Statistics such as these highlight the substantial gap between the public health burden caused by mental illnesses and the resources needed to prevent and treat them, particularly in low- and middle-income countries. In some lower income countries, for example, families cope with the lack of treatment resources by chaining a mentally ill relative to an immovable structure, such as a tree or a bench, where they are open to public scrutiny, teasing, and humiliation. In others, they are caged, beaten, maltreated, or thrown out of their communities where they are mauled or eaten by wild animals (Lee, 2002). As this literature shows, in addition to the symptoms of the illness, people with mental disorders must also endure important structural inequities that impinge on their health, welfare, civic participation, access to resources, and quality of life, and this is particularly true of people with mental illnesses living in middle- or low-income countries where flagrant human rights abuses are common (Arboleda-Florez & Stuart, 2012). Negative societal responses to people with mental illnesses may be the single greatest barrier to the development of mental health programs worldwide. These pernicious effects, and the associated human rights issues, are increasingly recognized as a worthy target for social action. In recent years, a number of programs have been implemented under the rubric of ‘antistigma programming’ to promote greater social equity for people with mental illnesses. This paper provides a narrative review of antistigma programming using examples drawn from different countries to illustrate promising or best practices in the field. The paper does not provide an exhaustive or systematic review of anti-stigma programs, but rather selects programs for the elements that best illustrate the points being made. Large, more recently mounted programs, and those with an evidence base were preferred as they provide current examples of activities in the field. Large national or regional programs are noticeably absent in low- and middleincome countries; however, a number of local implementation projects are discussed to illustrate the potential for transferability of concepts and approaches from high- to low-income settings. Stigma defined Link & Phelan (2001) have noted that considerable variation exists in the scientific literature concerning the definition of stigma. In many instances, it is used vaguely to refer to a mark of shame or disgrace, or to some related concept such as stereotyping or rejection. When it is explicitly defined, Goffman’s seminal conceptualization is often used, where stigma is an attribute that is deeply discrediting – one that taints the bearer
and reduces their social value. By comparison, Thornicroft (2006) focus on three social psychological aspects of the problem: knowledge, attitudes, and behaviour, while Link and Phelan take a broader, sociostructural view. From this broader perspective, stigma exists when a number of components interact. First, people must distinguish and label a particular human difference (in this case mental illness) as socially salient, resulting in culturally derived categories that are used to differentiate people into groups. Second, labelled differences must be linked to a set of undesirable characteristics thus forming a negative cultural stereotype (or oversimplified characterization) that is summarily applied to every member of the group. Third, those who are so labelled and stereotyped are seen as fundamentally different from the dominant group, creating an ‘us-them’ demarcation. Fourth, stigmatized groups are socially devalued and systematically disadvantaged with respect to access to social and economic goods (such as income, education, housing status), creating poorer health and social outcomes. Discrimination may be experienced in the context of individual interactions, or it may be structural, when accumulated institutional practices create inequities. Finally, stigmatization is entirely contingent on access to social and economic power, as only powerful groups can fully disapprove and marginalize others. According to this conceptualization, approaches to stigma reduction must be multi-faceted to address the many mechanisms that can lead to disadvantaged outcomes; and multilevel, to address stigma perpetuated at the individual and social-structural levels. Link and Phelan suggest that interventions targeted at only one mechanism (such as employment equity), will be doomed because their effectiveness will be undermined by the broader social factors that are left untouched. They suggest that interventions must either produce fundamental changes in the negative attitudes and beliefs of members of powerful groups, or change the power relations that underlie their ability to act on these attitudes and beliefs (Link & Phelan, 2001). When considering stigma in a global public health perspective, a definition that highlights the serious social and structural forces that create inequities for people with a mental illness is preferred, because this is the stark reality for those living in middle- and low-income countries, where policy, health system, and financial resources systematically exclude people with a mental illness and their family members. Despite the comprehensive definition offered by Link and Phelan, many anti-stigma programs continue to use the term ‘stigma’ synonymously with attitudes (e.g. Time To Change, http://www.time-to-change. org.uk, see Me Scotland, http://www.seemescotland. org). Advocates such as Everett (2004) or Sayce
global mental health
(2003) have criticized the stigma-as-attitude perspective because it fails to highlight the fact that people with mental illnesses routinely have their civic and human rights violated. They would prefer a rights-based or social justice model that shifts the emphasis away from attitudes to the need for social and economic equity for people with disabilities in all areas of life, including access to health services, education, and work. Cross-cultural differences in stigma Outside of the clear structural inequities in mental health systems and access to care that disproportionately affect low- and middle-income countries (The World Health Organization, 2003), there have been few attempts to directly examine cross-cultural differences in public or personal stigma using common standardized approaches to data collection and measurement. A notable exception is the study by Thornicroft et al. (2009) who have documented the personal stigma experiences of 732 people with schizophrenia from 27 developed and developing countries. Fully three quarters (72%) indicated they felt the need to conceal their diagnosis, 64% anticipated they would be discriminated against in applying for work training or education, and 55% anticipated discrimination in close relationships. The effects of discrimination were evident across a broad range of daily experiences such as with family, friends, and employers, across all of the countries studied. In a subsequent analysis, qualitative data from 15 of the participating countries was undertaken (Rose et al. 2007). Surprisingly few cross-cultural differences were identified, confirming that personal experiences of stigma are pervasive and a global public health problem. In 2015, the ASPEN study group (Anti-stigma Program European Network) examined discrimination reported by 1082 people with depression in 34 countries categorized according to their Human Development Index score (Very High; High; Medium/Low) (Lasalvia et al. 2015). Participants in high-income countries (with higher human development index scores) were statistically more likely to anticipate being discriminated against, but were no more likely to report having experienced discrimination. Potential reasons for the higher anticipated discrimination in high-income countries include the nature of employment, broader socio-economic context, explanatory models of mental disorders, and selfattribution. For example, almost twice as many individuals living in high-income countries anticipated employment discrimination. In lower income countries, there may be a greater emphasis on family and community ties and higher levels of community support for people who have mental disorders. Explanatory models
of mental disorders in lower income countries also place less blame on the individual and the family by attributing causes of mental illnesses to external factors beyond the individual’s control such as God’s will, Karma, or other supernatural entities. The service user movement in lower income countries is under-developed or nonexistent so individuals with mental disorders in these countries may be less aware of the nature of stigma and its consequences. As countries develop, anticipated stigma may increase. In 2015, Stuart et al. (2015) examined the image of psychiatry and psychiatrists among a randomly selected sample of 1057 non-psychiatric clinical teaching faculty across 15 academic teaching centres, the bulk of which were in lower and middle-income countries. A total of 90% of respondents considered that psychiatrists were not good role models for medical students, 84% thought psychiatric patients were unsuitable to be treated outside of specialized facilities, and 73% thought that psychiatric patients were emotionally draining. There were statistically significant differences in stigma scores (calculated as the count of all items endorsed) in only three countries (China, which was lower than average; and Ukraine and Russia, which were higher than average). Country differences explained only 18% of the variation in the mean scale score. These results support the idea that negative attitudes held by professionals are globally pervasive and more similar that dissimilar across countries. More recently, Seeman et al. (2016) conducted a world survey of mental illness stigma using a novel web-based platform that reached more than half a million respondents in 229 countries. This study did not use a standardized stigma measure and probably targeted web-savvy respondents (young, males, with higher education). In the more developed countries (Canada, the USA, and Australia), 7–8% of respondents indicated that people with a mental illness were more violent, compared to 15–16% in developing countries (Algeria, Mexico, Morocco, and China). One can only speculate as to why those in developing countries are more apt to describe someone with a mental illness as violent. As Seeman and colleagues point out, culture, tradition, and access to education and healthcare all shape public perceptions of mental illness. It is difficult to know whether attitudinal or other factors that are associated with the lower treatment gap in high-income countries compared with low, may account for these differences. For example, in developing countries because there is a relative lack of treatment and hospital facilities to prevent or contain potential violence, one might imagine that there is greater exposure to serious mental illness and associated violence in the community. However, in many developing countries, people with more serious
global mental health
disorders are typically managed at home where they may be hidden away to avoid shame and embarrassment, or they may be segregated in large and far away mental hospitals. Those in the community would then represent people with less severe disorders who are less likely to become violent. Despite dayto-day experiences, the public stereotype still may be that the ‘mentally ill’ (defined as those that must be hidden away) are more disturbed and violent. Whatever the explanation, these findings do suggest that the content of public stereotypes may differ depending on country and development level. More research is now needed to uncover the social and cultural conditions that may explain these findings. There is also evidence that the content of public stereotypes and stigmatizing attitudes differs depending on the disorder group considered. For example, in a random sample of Americans responding to the General Social Survey, vignettes of people with drug or alcohol dependence were more likely to be rated as likely to be a danger to others (over 60% agreed); compared with those who were troubled (
